Sarcoma Stories

On this episode we are joined by Ken Cleary, an angiosarcoma survivor and amputee. Ken describes the journey to diagnosis, how he made the decision to go forward with an amputation as his frontline treatment, and how he has adapted to life afterward. Ken’s reflections on his experience are honest and inspiring - his perspective both grounding and motivating. Of the many topics we discuss, we talk at length about the trust Ken put in his care team while making extremely difficult decisions, and how they have helped him through more than just his treatment. His team made such a profound impact that Ken nominated his nurse, Colleen Forbes, to receive SFA’s 2026 Compassionate Care Award, which she will be honored with at the 2026 Stand Up to Sarcoma Gala in October. We invite you to listen to Ken’s remarkable story, and if you are interested in honoring those who are making strides for the sarcoma community, we invite you to attend the Gala this October as well! With that, let’s hear from Ken! Information and Resources:Gala Information and Tickets:https://standuptosarcoma.curesarcoma.org/Subtype Page: https://curesarcoma.org/sarcoma-subtypes/angiosarcoma/Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704Connect With Ken:Ken’s Instagram: @clearyken https://www.instagram.com/clearyken/

On this episode, in honor of Sarcoma Awareness Month, Brendan Locke shares the sarcoma journey of his wife, Melissa Locke. Brendan and Melissa have been vital in the advocacy work to get July nationally recognized as Sarcoma Awareness Month and you’ll hear the origin story of how they first brought this to their elected officials in partnership with SFA.Through emotional reflections on Melissa’s journey, we discuss why the visibility for sarcoma through a dedicated month is so important and talk about the hope we share that this platform may lead to the funding needed to achieve better treatment options for sarcoma patients.We are so grateful to Brendan for sitting down with us and have this conversation, and also to Melissa - for all she did for the sarcoma community, and all she continues to inspire through the hope she held. Hope that cannot be extinguished by death.Subtype Page: https://curesarcoma.org/sarcoma-subtypes/synovial-sarcoma/Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704Brendan’s Email: [email protected] Senate Resolution: https://www.ronjohnson.senate.gov/2026/06/10/sen-johnson-leads-senate-passage-of-national-sarcoma-awareness-month-resolution/ Reading of the Resolution on the Senate Floor: Fast forward to 3:54:30 (S.Res.765): Congressional Chronicle - Members of Congress, Hearings and More | C-SPAN.org | C-SPAN.org

On this episode, we’re joined by Rohini Deivasigamani, a 25-year-old from New Jersey who was diagnosed with Ewing sarcoma at 14 years old. Now, a decade later, she reflects on her journey from teenage cancer patient to young adult survivor and shares how time and perspective have shaped the way she processes that experience.Rohini shares not only about her own diagnosis and treatment, but also about her father’s cancer diagnosis, which came shortly after hers. She discusses how her understanding of what they both endured has evolved over the years and the lasting impact those experiences have had on her life.In recognition of National Cancer Survivor Month this June, we’re honored to share Rohini’s story with our community. Ten years after completing active treatment, she offers a real look at what survivorship means, the challenges and growth that come with it, and how she continues to navigate life beyond treatment.Rohini’s optimism is magnetic, and her honest reflections are sure to resonate with many in the sarcoma community. Thank you so much, Rohini, for joining us and for sharing your story so openly. Let’s dive in.Resources:Ewing Sarcoma Subtype Page: https://curesarcoma.org/sarcoma-subtypes/ewing-sarcoma/Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704Connect with Rohini:Rohini's Ted Talk: https://www.youtube.com/watch?v=-nvcWaMXM2sInstagram: https://www.instagram.com/rohinideivTikTok: https://www.tiktok.com/@rotalksLinkedIn: https://www.linkedin.com/in/rohini-deivasigamani-758712207/

This week, we speak with Sarah Downey, an angiosarcoma patient, advocate, and writer. Sarah takes us through her diagnosis journey, which included misdiagnosis and dismissal of symptoms, all while navigating her senior year of college. Since her diagnosis, she has navigated treatment as she’s entered young adulthood, and shares with us what it’s been like coping with the uncertainty of sarcoma alongside this major life transition. A lifelong writer, Sarah recently began the project Echoes of Us RI to highlight stories of fellow patients, medical professionals, and caretakers, contributing to narrative medicine as a form of advocacy. Sarah explains how this has played a role in her journey, and also given her both an outlet and a purpose. When she isn’t writing or at treatment, Sarah travels as much as she can (and gives some tips on how she makes this work between treatments!), and talks about how she chooses to live despite her prognosis. This episode will both educate and inspire - true to Sarah as a writer and a human.Resources:Subtype Page: curesarcoma.org/sarcoma-subtypes/angiosarcoma/Discussion Guide: curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/Sarcoma Stories FB Group: www.facebook.com/groups/512452631597704Connect with Sarah:Sarah’s Instagram: : www.instagram.com/sarah.downey20/Echoes of US RI Instagram: www.instagram.com/echoesofusri/Echoes of Us RI: www.echoesofusri.com/

On this episode, we speak with Gianna Cericola, a survivor of Desmoplastic Small Round Cell Tumor (DSRCT for short). After two long years, she rang the bell signifying the end of active treatment just two weeks before we recorded this episode. We feel so lucky to be able to sit down with her at this pivotal moment of transition. Gianna opens up about what being done with treatment actually means, and why the end of treatment isn’t the end of a cancer diagnosis.She shares about how she’s relied on self-advocacy, not only to receive a diagnosis but to navigate treatment and conversations with her medical team.As an adolescent young adult, Gianna talks about continuing to live her life through her diagnosis - including getting engaged during treatment and thinking about surrogacy to one day build her family - and why it can be difficult to plan for the future.This episode is full of raw and honest insight into Gianna’s experience, and we are so grateful for the time she took to share with us.We also wanted to note and give insight to a conversation we have about Gianna’s subtype being classified as ultra-rare. Sarcoma is a rare cancer to begin with, but within the numerous subtypes of sarcoma, there are some, like DSRCT, that are considered “ultra-rare” - defined as subtypes with an annual incidence of 1 or fewer cases per million people. Thank you Gianna for giving voice to the experience of being diagnosed with an ultra-rare subtype.Subtype Page: https://curesarcoma.org/sarcoma-subtypes/desmoplastic-small-round-cell-tumor/Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704Connect with Gianna:Gianna’s DSRCT Group: https://ig.me/j/Abb-dS58-Ff-DnKH/Instagram: @gianna.cericolahttps://www.instagram.com/gianna.cericola/TikTok: https://www.tiktok.com/@gianna.cericola